The articles below, from four long-term survivors and two long-term caregivers, offer insights and advice about dealing with ALS — whether for the long haul or the short run. Although each journey with ALS is unique, these “old pros” agree that the secret of survival has as much to do with ways to be alive as ways to stay alive.
30 years … and counting
|Wilfred Griebel received his ALS diagnosis in 1979.
Wilfred Griebel of New Ulm, Minn., who was found to have ALS in 1979, says that keeping busy has helped him cope over the past three decades with his diagnosis.
“Work hard, play hard, have fun, and keep a good sense of humor,” is his advice for others affected by the disease.
“I have always decided that I will not let [ALS] stop me,” says Griebel, 82, who received MDA’s Robert Ross Personal Achievement Award for Minnesota in 2008. “I will keep busy and make the most of every day.”
Griebel has a very slowly progressing form of ALS. He uses a manual wheelchair, with a scooter for long distances, and was able to walk short distances with a walker until he broke a hip in November 2008. He temporarily resides in a nursing home while his house is being remodeled.
Having served as a military police officer in World War II, Griebel still is an active member of his local American Legion and VFW, attending meetings and activities.
A retired farmer, Griebel and his wife of 59 years, Irene, have a farmhouse on the small farm they sold to a son, a daughter and her husband. They enjoy visiting the cows, horses, chickens, dogs and cats from their golf cart.
The couple and their family (five children, 12 grandchildren and nine great-grandchildren) are major fans of car racing, watching the NASCAR races on television and attending the stock car races once a week during the summer. In the winter, the family stays involved with racing through a fantasy racing Web site, where they earn points based on how well their chosen teams do during the season.
The family participates in MDA fundraisers and events, and answers phones at the local broadcast of the Jerry Lewis MDA Telethon on Labor Day weekends. Griebel also participates in ALS clinical trials.
“I believe ALS has made my family very close and very strong,” he says. “Our family has learned to deal with the hard times and make the most of the good times.”
Funny hats help him to inspire
|Larry Hill, with wife, Mary, and granddaughter, Melaina.
Larry Hill and his wife Mary Jane began attending their Missouri MDA ALS support group meetings 15 years ago, coincident with the year Larry learned he had ALS.
The standout aspect of their attendance at the monthly meetings is Hill’s selection of hat, which he wears to jibe with the spirit of the season. This April, for example, his headgear consisted of large rabbit ears.
He says that humorous approach, along with his odds-defying tenure with ALS, inspires others in his support group to embrace a sense of fun while continuing to confront the realities of the disease. He also wonders if his take-it-as-it-comes outlook could be a reason he’s avoided a final showdown with ALS as long as he has.
“What’s in my life is there. I’m not going to surrender to it. I’ll worry about tomorrow, tomorrow, if I choose to worry at all,” he says. “That would be my advice to others with ALS, too.”
Hill was a truck driver before his diagnosis, active in bowling, fishing and playing softball in his church league.
One of his biggest joys was being with family and raising his daughter.
Today he’s immensely proud, and humbled, that his daughter became a physical therapist after watching how doctors and therapists worked with him. He uses a DynaVox communication device, has a feeding tube (although he prefers to eat normally) and can transfer with the help of a walker.
Now largely ensconced in an easy chair at home (Mary Jane works full time, but can come home on short notice if needed), his greatest joy is his granddaughter. Watching her discover new things, from new foods to playing house, is one of the most meaningful activities in his life, he says, as well as one of the ways in which he continues to grow.
Hill’s outlook for the future is optimistic.
“When I was diagnosed with ALS, the doctors told me there was very little they could do. Today, with mice and stem cell research, I feel a cure is very close,” he says. In the interim, he continues to stay abreast of new research findings through his support group, and buoys his faith through his church — and his hat collection.
’It’s what I do’
|Linda Gibson has been her daughter’s full-time caregiver for 15 years.
It’s all about family and faith, says Linda Gibson of Arlington, Texas, a full-time caregiver to her daughter Marcie, who has lived with ALS for more than 15 years.
A preschool teacher for 25 years prior to Marcie’s illness, Gibson sometimes misses her career, but says, “taking care of Marcie is what I’m meant to do now, and I’m so glad I get to do it.” To this end, she has become an expert in Marcie’s high-tech care and also has learned to take time to care for herself.
A grandmother of two, Gibson says her mother-friend-caregiver relationship with Marcie, now 38, has evolved since Marcie received her diagnosis at age 23, just as she prepared to graduate from college.
“I had to learn how to stop treating her as a child and start treating and listening to her as an adult,” admits Gibson, who prides herself on being able to read Marcie’s eyes. “I always try very hard to respect her wishes, and Marcie always makes her own decisions.”
Gibson finds ways to take some time for herself. While Marcie’s using her eye-tracking communication device, Gibson surfs the Internet and communicates with other parents of children with ALS. She also enjoys gardening, crocheting and scrapbooking in free moments here and there. In the evenings, while Marcie’s father is at home, Gibson goes out for a 45-minute to an hour walk, or runs errands.
She advises other parents/caregivers to try to live as normal a life as possible.
“Your child is always your child no matter what their age. I’m very proud of my daughter and the way she’s fighting ALS. I just do anything she needs. It’s just what I do.”
Treatment decisions keep him in control
|Frank Healy gets a hug from daughter, Claire.
“My quality of life is good because of my wife and kids and my mother and sister, and the VA benefits mean I don’t have the financial crises that most people with ALS face,” says Frank Healy, 55, of Bloomington, Ind., who received an ALS diagnosis in 1996.
Healy says his wife, Maria, is always there “if I need her,” and they hire a caregiver Monday through Friday so she can work, in part, “to stay sane.
A Gulf War veteran, Healy has used a power wheelchair since 1999 and a trach and feeding tube since 2007. Three years after his ALS diagnosis, he was found to have Lyme disease and was treated for 15 months with antibiotics. One of the antibiotics, ceftriaxone, is now being tested in ALS in clinical trials. “I’m guessing that the antibiotics may have had some effect on my longevity,” says Healy, adding that Robert M. Pascuzzi, director of the MDA Clinic at Indiana University Hospital in Indianapolis, has a similar opinion.
Healy makes a point of being involved in decisions about his treatment and care. For several years, he tried various alternative therapies, including oriental medicine, acupuncture and herbs, spiritual healers and eating strictly organic foods to detoxify his body.
“In spite of all this, I still have ALS, but I am in my 13th year,” says Healy, who still has some ability to speak but tires easily. “I will never claim that I have slowed my progression, but I also won’t die wishing I had tried harder.”
Husband caregiver stays flexible
|Caregiver Curry Worsham, with wife, Erin, and son, Daniel.
Curry Worsham is the primary caregiver for his wife Erin, who received an ALS diagnosis in 1994. But he has help and is grateful for it.
“The state of Tennessee provides private duty nursing for certain chronic cases. We are lucky to live in a state that provides this care. Most do not. On most days we have an eight-hour day nurse and an eight-hour night nurse. For eight hours a day, I am her sole caregiver. If a nurse is sick or can’t do her shift or the office doesn’t have anyone — happens often — I do the shift,” he says.
Worsham, 54, has a vending machine business in Nashville where they live. He works up to seven hours a day, up to six days a week. He tries to work while a nurse is at home with Erin, but his work hours are flexible if he needs to rush home.
He says his most important responsibility “is just being there ready to respond to an emergency.” Emergencies often take the form of ventilation problems, in which Erin’s air intake becomes blocked and immediate action must be taken or she could die. Worsham notes, “We think we’ve dealt with every possible scenario, but there is always a new one.”
Erin is very determined and creative, and that’s important, Worsham says: “Long-term survivors with ALS should definitely have something creative they love doing, as opposed to simply auditing and observing.” (Quest has published several of Erin’s digital paintings, which she creates by using a sensor between her eyebrows to operate a computer.)
For Worsham, the most challenging aspect of caregiving is dealing with Erin’s anxiety. “She’s always been prone to anxiousness and panic attacks,” he says. “Now, with ALS, when things get stressful, it’s particularly difficult for her.”
Their son Daniel (born nine months after Erin’s diagnosis) has been a tremendous asset in that regard: “The job of watching him grow has, literally, taken our minds off this stuff (ALS).
“I don’t think I get too stressed out [by the demands of caregiving] because I pull back and give myself a break,” he says, adding wryly, “Besides, I get so stressed out over the financial side of things that it makes everything else seem like a piece of cake.”
He treats ALS as both obstacle and gift
|Jeff Lester, surrounded by wife, Lisa, and their three daughters.
Jeff Lester says he has managed to cope so well for so long with ALS (he learned he had the disease 15 years ago when he was 27) mainly because of his parents and his wife.
“My dad instilled in me the values, drive, attitudes and most of all tenacity to overcome any obstacle in my life to find success, fulfillment and happiness. The most important lesson he and my mom taught me was to live your life to the fullest and to love completely.
“That allowed me to find true love with my wife Lisa. Without Lisa, I would not be here today.”
Lester married Lisa a year after receiving his diagnosis, and went on to father three daughters. “The much deeper appreciation I have for them because of my ALS gives me a pretty great quality of life — better than most,” he says.
Despite complete immobility, Lester stays busy. On trach ventilation since 1997, he’s halfway to earning a masters degree in business administration and a masters of science in finance. His ultimate goal is a Ph.D. Eventually he hopes to become an online professor.
Lester’s advice for others with ALS is “to truly live and not merely exist, because that’s not living. Save the regrets for after you’ve left this life because then you’ll have plenty of time.”
He also feels he’s still growing. “I truly believe, regardless if you are well or sick, if you allow yourself to stagnate, you will wither and die,” he says. “I hope I am having the same positive influence in my daughters’ lives as my parents had in mine.”
Lester says he even still feels like he’ll walk again, even though it’s been 11-plus years since he last did. “In my dreams,” he says, “I still envision myself as physically whole.
“My thoughts are that if you want to follow my path, quit thinking that ALS is a terminal disease, but rather an obstacle that you need to overcome. For anyone, I would say view your ALS as a gift. It has freed you of the everyday worry and stress that makes most miss the important things in life.”